Drug Study is a No-Go!

Last week rheumy's office called saying "he wants to see you next week."  Hmmm, well that has never happened before, wonder what he wants.  Does it have to do with my recent blood work or is it about the study?  Of course the anxiety started to do a number on my psyche - I really could have used some Lexapro, since I didn't have any I had to take a few deep breaths and let go and let God.

Tuesday rolls around and I make my way to rheumy's office (not an easy task on public transportation in NYC; think few escalators and even fewer elevators).  Since we all love good news, I'll give to you first - there was nothing unusual about my blood work; bad news - I can't participate in the drug study.  Because it is an IL-6 and works within the body similar to Actemra, rheumy doesn't feel comfortable taking a chance.  While disappointed, I had to agree with him.  I never want to go back to that feeling of having an elephant sitting on my chest.

We discussed the options: 1. start Rituxan, sorry I don't think so, can't wrap my mind around that at least not yet; 2. wait for next drug study, okay if it starts within next 1-1 1/2 months; 3. add Arava (as a stop-gap measure) and remove Tramadol (honestly, it wasn't really doing much for pain) from drug regimen.  So I opted for 2 & 3. 

I can't imagine how people used to think that docs had all the answers to me medicine is just an experiment on a really grand scale.  You know, let's try this combo and if that doesn't work we can try this combo over here.  I am not disparaging docs, after all where would I be without my trusted rheumy?; but you have to agree that it is all experimental and we are the animal looking for the reward (read as: magic bullet to remission). 

We are our best advocates.  Present me with the options and let me make an informed decision, after all it's my body with all it's aches and pains.



www.actemra.com

Deja Vu - Farewell All Over Again

It has been a while since my last post, and I apologize for that.  This post is another farewell, but this time to Simponi www.simponi.com. After four injections, there was absolutely no improvement in my symptoms; not even a small reduction in fatigue, swelling or stiffness. As a matter of fact I have been in more pain and more fatigued.  (Plus that auto-inject pen was not easy to operate). So, my rheumy and I decided that it didn't make sense to continue taking the Simponi if there were no benefits. 

Honestly, I hadn't really expected any improvement (perhaps that was the wrong attitude from the beginning) since Simponi is a TNF (tumor necrosis factor-alpha blocker) blocker like Humira www.humira.com, which plateaued and was not an effective treatment for me.  My rheumy tried Simponi because he states that sometimes patients who have used a TNF blocker in the past will have better results the second time around.

So now, what course of action do we take?  There is a drug study for another IL-6 biologic and we decided since I had such positive results on Actemra www.actemra.com which is also an IL-6 biologic, I would be enrolled in the study.  For the next three months I cannot take any biologic drug while we wait for the Simponi to completely leave my body. Yikes!! this looks like a scary place to be (again!). Over the past 1 1/2 years my life has been a series of deja vu moments from going months with a biologic to saying farewell to one biologic after another. 

I am so ready for this roller coaster to stop because I WANT OUT OF THIS INSANITY!!!!!!

Farewell Actemra, Hello Simponi

Well, do you want the bad news first or the even badder news first? I have had to say farewell to Actemra (boo hoo, boo hoo).

This was the first biologic that had a very significant effect on my joints, especially my larger joints - hips and shoulders.  I first tried Actemra January 2010 - May 2010 and developed some strange problem with my lungs so I stopped taking it until the docs (pulmo & rheumy) could figure out what the problem was and to fix it.  Well that took until about December 2010, needless to say that I experienced some of the worst flares during that time period.  The pulmo doc finally diagnosed me with RAD (reactive airway disease) and asthma, and found the right combo of meds to get it under control.

In January, while at the pulmo doc's office, we had a phone conference with my rheumy and all decided that it was okay for me to re-start Actemra.  Yippeeee!!!!

I couldn't wait for my first infusion. That went off without a hitch and then I had my second infusion in February, again all green lights. Well ... by the end of February I was having problems with my lungs again.  I guess that definitively linked my lung problem with Actemra, so once again I had to stop Actemra.

My rheumy said we had to decide which biologic we were going to try next, so I searched the Internet to review all of the drug options available for RA. I looked long and hard at Rituxan, but boy oh boy those side effects are scarier to me than for the other biologics. The only appeal was that you get an infusion 1x every six months, I was even willing to sit through an 8-hour infusion session. 

At my next rheumy appointment I told him I had done research and was very scared of Rituxan, while is reason for having that biologic as a last resort was different from mine, we  both agreed that it was not the right one at this time. We discussed that I had taken a biologic that worked on IL-6 (Actemra), T-cell (Orencia), and a TNF blocker (Humira). He said that sometimes when you go back to a TNF- blocker some patients have success, so we decided on Simponi and the approval process started.

I will let you know how long I have to wait for approval, and how my first injection goes. Tell then, gentle hugs.

Cheers Are In Order

Cheers!

Yesterday was my second Actemra infusion. I am glad to report that so far I have had no side effects. While I am not experiencing the dramatic improvement that I felt last year at this time, I am hopeful.  At the very least, my Reactive Airway Disease is still under control, so maybe it didn't develop as a result of taking Actemra last January.

My fingers, toes, and eyes are crossed!

New Revelations

I apologize for going so long between posts; here's an update.  First, I did get my Actemra infusion http://www.actemra.com/ on  February 2nd (missed my January 28th appointment, got my times crossed) and everything went smoothly, despite the snow storm. Second, I have realized a few things:

              1. When I get my infusion I get a cocktail of Benadryl & Tylenol (I don't remember that from last year); no wonder I sleep through the whole experience.

              2. I have Sjogren's Syndrome http://www.sjogrens.org/. I kept wondering why I was constantly thirsty, mouth dry, eyes dry, skin extermely dry. (The thirst had me afraid that I had developed diabetes). Now I use Biotene toothpaste, mouthwash, and gum, Thera Tears, and tons of lotion (shea butter) & vaseline (more expenses, sheesh!).

             3. I need B12 shots and vitamins (sent rheumy an email about this); this exhaustion is kicking my behind and I am tired of napping my life away.

             4. I think I have Costochondritis htp://emedicine.medscape.com/article/808554-followup, explains why my rib cage, from front to back, is so tender.

             5. I need pain meds!!! That last flare was so painful and prolonged. I refuse  to suffer through another one with pain meds (sent rheumy an email about this too).

             6. I really LOVE my online RA family. They are supportive, informative, encouraging, tolerant (of my rants), funny, and always loving.

Next Actemra infusion http://www.actemra.com/ is schedule for March 2nd. Will keep you updated.

Coming Full Circle

It has been 8 months since I have had a biologic infusion for my RA. Last May I developed RAD (Reactive Airway Disease) http://www.buzzle.com/articles/reactive-airway-disease-in-adults.html while on Actemra and had to stop the infusions.  In January 2010, my rheumy added Actemra to my cocktail mix of meds since I had had limited success with Humira & Orencia.  I was so excited because I had read all the results of the different trials, including the ones conducted in England. I even read the statstical information on how many people developed negative reactions and what those reactions were and to me the results were promising.

I went to the website http://www.actemra.com/ and signed up for their patient support program; this is also something that I had done when I was on Humira & Orencia (I strong recommend that we take advantage of these outreach programs from the drug manufacturers).  This gives us, the user of these very powerful & dangerous drugs, an opportunity to share our experiences with the manufacturers, with other patients, financial assistance, a live nurse helpline.  Also, we are notified of any newly discovered side effects.  I strongly believe that you have to be you own advocate when it comes to your health.  

So.. I had Actemra infusions for January, February, March, April & May. By April I started to notice that my breathing was belabored.  I was seeing very positive results as far as a lessening of joint pain went. At that time I was still working and had to travel on the bus & train and realized that upon leaving the train station I could no longer walk up the flights of steps to leave the station.  In my never ending struggle to lose weight (especially Prednisone weight) I had stopped using elevators & escalators and started walking up steps at every opportunity in an attempt to walk at least 10,000 steps a day. I had also developed a cough, but I didn't have a cold, the flu or pneumonia. The cough was persistent and in the office it was quite embarassing. In my office, in the new style of management, we worked in a bunch of cubicles; no walls or doors, which meant that everyone could see and hear one another. My coughing was so out of control that it was disruptive to my co-workers. Adding to the embarassment was that often I couldn't make it to the bathroom and found myself heaving into my garbage can. Yuck!!

I am the self-appointed Queen of Self-Diagnosis; medical websites were made for me (see first post). After plugging in my symptoms, which were basically the coughing & vomiting I determined that maybe I was having gastro problems, something I had experienced years before. An appointment was made with my gastrointerologist (mind you I had just seen her in December and had an endoscopy and received a clean bill of health). She did another endoscopy and I received another clean bill of health. We were discussing the results and she suggested that I follow-up with a pulmonologist since the vomiting was caused by the cough not the other way around.


The day arrived for my appointment with the pulmonologist. Thinking back on that appointment makes me think of the posts I read about rheumys who are not at the top of their game and therefore not effective, whether it is because of inexperience or lack of knowledge. It is so important that our doctors be top-notch, and if not find another one! The first pulmonologist was completely at a loss after 3 months & two different meds did not improve my health. He wanted to put me in the hospital, which I completely opposed to. We all know that hospitals are notorious for patients developed respiratory conditions, plus who was going to look after my 13 year old son. I was vehemently opposed to being admitted. Finally, he referred me to his colleague.

Here I have to say - God is good. This pulmonologist had 30+ years of experience and he was the go-to doc for people who had been exposed to air pollutants at ground zero. So I felt that I was in good hands; turns out I was. He changed my meds and has worked with me over the last 8 months to get the RAD under control. In December he gave the green light to resume a biologic.

Well here I am, come full circle, because on January 28th I again take my first infusion of Actemra. I am optimistic. I believe that I will once again see a lessening of joint pain & an improvement in my quality of life.

Will keep you posted ...